man I probally shouldn't even answer you cause im one of the real bad cases you speak of but ill tell you this after 4 years of asking god if I could come home every night and waking up every morning in real bad pain I would look up to heaven and say NO again lord I feel god answers every pray he just says no sometimes but something has come over me a positive attidude that I cant explain I am disabled ive gone from a 165lb comp water skier and martial artist to a 105 lb dude that cant carry 2 gallons of milk up the stairs and I look like I died 4 years ago my life is like a pie chart and latey god has been smiling on me and I get 65 percent good and only 35 bad there is one thing about chronic pain you get used to it and when the painkiller starts working and you get out of it its GREAT heres hoping your case is mild and you will still be able to work but if it isn't get a doctor that understands it there is no CURE if you don't get enough pain meds and you own a hand gun you will kill yourself for sure get a doctor who is not afraid to write the scrip I take 64 mgs of hydromorphone a day and smoke 12 joints of med weed and im going out to live on the road and I cant wait this disease is like walking hospice theres no cure all they cvan do is keep you out of pain get a doctor willing to do that they are not easy to find well guck luck feel free to message me any questions TTYL

Well like my man D said there is no cure but as to working, I worked for two years after my first major acute attack and if oyu haven't had one of those you don't want to. My advise as to diet is first and foremost if you haven't already is no alcohol, not even in mouthwash, it is the one thing guaranteed to set off your panky, and the diet is what is important to not do that. There has been a lot of controversy of late about diet, as many of the former proponents of a low fat diet are now saying its ok to have fat in your diet and unfortunately that is one of those things your gonna have to find out for yourself as we and our levels of disease are all different as is the foods that set each of us off. I think foods that have the good fats and oils in them are ok, but some folks can't even eat those, it all depends on how if affects you personally. If it hurts even a little when you try something, mark it off your list. If your able to tolerate things like avocados and nuts seeds these are things with beneficial fats and oils the body needs to function properly. Make sure you get a good GI doctor as well as a good pain management doctor as you will need a good one to help you with a lot of the testing and such your gonna need. You will also need enzymes which is what is usually the first thing prescribed as we with this disease have a problem with the pancreas producing enough digestive enzymes to properly digest our food, there are a lot of different names but it is basically the amylase and lipase that the pancreas produces. If you haven't been scripted for some yet then buy some pinapple, papaya, and any over the counter digestive enzymes you can afford to tide you over until you can get the prescription ones. Hopefully you won't be one of the hard core ones as some of us are, but whichever way it turns out there are ways to treat your symptoms, and no there is no cure and the pancreas is the one organ in our bodies that will not regenerate itself, so the less damage you continue to do to it the better. Hope this helped.

let me add something about diet watch out for raw veggies that are fiborous like celery they are hard to break down you would be better off with pizza I have been living on mcdonalds milkshakes and gained more weight in 6 weeks than I did with a feeding tube 16 hours a day for 14 m,onths I have a app to get the feeding tube out on may 22 and im STOKKKKKKKKEDDDDD it will bee so great to not have that 9 inch piece of crap hanging out of my stomach but diet u have to play by ear you will tolerate different things than I will lets hope u don't need this advice because you stay acute and don't even have a another ever or for years down the cause there is no way me and troy will be happy if u have to join us I wouldn't wish this on my exwife and she is a major C WORD well best of luck any questions you have bring them ttyl

Hi Karin,

Sorry you've joined our group. I am one of the lucky ones, they found my CP early and I have been working very hard to slow the progression. I was out on short term disability last year for 6 months, but was able to return to work about a year ago. I eat very low fat, 20 GMs or less per day. I count everything. I also try to eat more protein for energy. I saw a nutritionist for help with the diet. The other thing I'm doing is taking anti-oxidants. My GI recommended it. I take Vit E, Vit A, Vit C, Selenium and Grape seed extract. My GI also started me on pancreatic enzymes so I could digest food better and get more nutrients from the food. You also have to take it slow in terms of activity. If I do too much in one day, I have more pain. The low fat diets is critical and will help keep it from progressing. Also, does your GI have lots of experience with the pancreas? That's very important so you get good advice. Diane posted a list of GI specialists and the thread is pretty recent.

This is a great group and you can get lots of good information from everyone. It's been very helpful for me.

Good luck!
GG

thank you for your responses

Hi,
I was diagnosed eight years ago with CP. I also have two major blood clots. I was having sever attacks every two weeks. This went on for five years. My pancreas is 100 percent scared. The good news is that now, for some weird reason, I can eat whatever I want. I haven't had an attack in five months. I go to work every day and SUBA dive twice a month.

My saga started last June. I was in the hospital for 4 months with necrotizing pancreatitis and off work for 7 months total. I am working now, but I have severe physical limitations, so I'm lucky that my job isn't physically demanding and that I have sympathetic coworkers. As far as my pancreas, I'm managing. However, I still have a giant hernia from the multiple surgeries after I was hospitalized and a drain because my pancreas is still leaking. On a day to day basis, I'm doing fine with working. I'm lucky to have that outlet to keep my mind busy. I have to be careful with my diet for the rest of my life and I'm doing okay with that. I'm trying hard to get my life back and it's not easy.

Hey @dcocfield59 "I am disabled ive gone from a 165lb comp water skier and martial artist to a 105 lb dude that cant carry 2 gallons of milk up the stairs"


That sucks bro...are you able to hold down high calorie (low fat) meal replacements shakes to get back to around 150-160lbs?

im off and on now im living on mcdonalds milkshakes I was drinking about 5 or 6 a day I gained more weight in 6 weeks than I did in 15 months on that damn feeding tube than I go into a bad spell where I can barly handle 1 milkshake a day then I lose it back right now im at 107 the highest I got was 122 under 100 is danger for me im 5 foot 8 inches that's how this disease goes at least for me its like walking hospice just waiting for the attack I can ride HOME on

Hi Karin,
I'm new to all of this as well...like everyone here, I'm trying very hard to watch what I eat. I had an acute attack(not my first) in February and it's taken me since then to get things calmed down quite a bit. I gave up meat, gluten, dairy and fats. It was very depressing and stressful, but the pain was chronic and horrible, so I had no choice. I'm getting used to the diet now. I lost 15 pounds in a few months, and I'm already thin, but my weight is stabilizing, I'm starting to exercise again, and I'm feeling better. My pain seems to always flare up at night, and it makes it hard to sleep through the night. I find if I keep food by my bed, and eat just a bit, in the middle of the night, that helps a little. It's all very frustrating and difficult, but I'm trying to get my life back, and just enjoy the little things. They caught it early too...but I still worry that it will continue to get worse, hopefully with the new diet, it will continue to be somewhat stable. I don't have to take strong painkillers yet, so I'm keeping my fingers crossed. Hang in there...one of the things my GI said, was that some people DO stabilize and don't get a lot worse...I'm hoping I'm one of those people...and maybe you will be too. There are some incredibly brave people in this group...I'm glad I found it...I don't feel as alone now.